Insanely High HHV6 Level

Hi, I'm new here and this is my first post! I actually haven't been diagnosed with CFS (I don't have enough symptoms) but was just diagnosed with POTS. One of my doctors decided to do some viral testing because it seemed to be viral-onset and I still have swollen lymph nodes. Well, I just got the results in the mail and am freaking out.

My HHV 6 IgG results and they are AWFUL - 66.95 and the lower limit for positive is >0.99. That's not a typo, that's 67 times the normal limit. I haven't spoken to my doctor yet so I don't know quite how bad this is but after looking through some posts on here I noticed that some people said that even 8 is quite high.

Other viral/bacterial tests have shown nothing really: My EBV and CMV titers are quite good and I tested negative for Parvo a few months ago.

My doctor wants me to start Valtrex because this all started when I contracted HSV 1 last year. Now I'm kind suspicious that it's even an issue though - I haven't even had another cold sore since my initial outbreak. (I'm sorry if that's gross!) And from what I've read, Valtrex does nothing for HHV 6 and that seems to be my biggest issue.

After getting diagnosed with POTS I felt like..okay, I know what's wrong, I have a good chance of improvement at least. But after getting this result I feel like I'm probably just going to get worse. I'm not sure what steps to take now. What other tests do I need to have done? What, if anything, are my treatment options? I know this is something I really need to discuss with my doctor but I'm terrified and would like some information before Monday.

Hi, I'm new here and this is my first post! I actually haven't been diagnosed with CFS (I don't have enough symptoms) but was just diagnosed with POTS. One of my doctors decided to do some viral testing because it seemed to be viral-onset and I still have swollen lymph nodes. Well, I just got the results in the mail and am freaking out.

My HHV 6 IgG results and they are AWFUL - 66.95 and the lower limit for positive is >0.99. That's not a typo, that's 67 times the normal limit. I haven't spoken to my doctor yet so I don't know quite how bad this is but after looking through some posts on here I noticed that some people said that even 8 is quite high.

Other viral/bacterial tests have shown nothing really: My EBV and CMV titers are quite good and I tested negative for Parvo a few months ago.

My doctor wants me to start Valtrex because this all started when I contracted HSV 1 last year. Now I'm kind suspicious that it's even an issue though - I haven't even had another cold sore since my initial outbreak. (I'm sorry if that's gross!) And from what I've read, Valtrex does nothing for HHV 6 and that seems to be my biggest issue.

After getting diagnosed with POTS I felt like..okay, I know what's wrong, I have a good chance of improvement at least. But after getting this result I feel like I'm probably just going to get worse. I'm not sure what steps to take now. What other tests do I need to have done? What, if anything, are my treatment options? I know this is something I really need to discuss with my doctor but I'm terrified and would like some information before Monday.

Click to expand...

Something promising is that u have an idea of what is causing your problems and another promising thing is that valcyte is used to treat hhv6, so there is a possible treatment for you.

I also suggest looking up research info from dr lerner or dr montoya.

Valtrex may have some affect against hhv6, some have found famvir has lowered their viral titres to hhv6 or cmv so it may be more useful then valtrex. but hhv6 seems to respond better to valcyte.

My HHV 6 IgG results and they are AWFUL - 66.95 and the lower limit for positive is >0.99. That's not a typo, that's 67 times the normal limit. I haven't spoken to my doctor yet so I don't know quite how bad this is but after looking through some posts on here I noticed that some people said that even 8.

Click to expand...

The good news is that an ELISA test (which is what you had if the result is reported as a single number; titer tests are reported as a ratio) are really only good for answering yes or no questions but not for telling you the extent of the infection or tracking treatment. An extreme elevation (above 8) is generally thought to likely signify a reactivated infection but your result of 66 is not some 8 times worse than a result of 8. Both would be considered evidence of a chronic infection.

What other testing did you have other than the viral testing you mentioned?

OI can often be a result of a disrupted HPA axis so I would strongly consider a cortisol test by saliva and also testing aldosterone. Florinef changed my life in terms of OI but it was a bit of a process to get there and there are some important testing protocols to follow.

The good news is that an ELISA test (which is what you had if the result is reported as a single number; titer tests are reported as a ratio) are really only good for answering yes or no questions but not for telling you the extent of the infection or tracking treatment. An extreme elevation (above 8) is generally thought to likely signify a reactivated infection but your result of 66 is not some 8 times worse than a result of 8. Both would be considered evidence of a chronic infection.

Click to expand...

Slightly off-topic, but a local lab gave me an odd (non-titer) result for an "ANA (ANF)" test of 194. No normal range is provided, and two other tests a month or two later from different labs showed negative ANA results. Is it possible that initial "ANA (ANF)" result was an ELISA test?

Slightly off-topic, but a local lab gave me an odd (non-titer) result for an "ANA (ANF)" test of 194. No normal range is provided, and two other tests a month or two later from different labs showed negative ANA results. Is it possible that initial "ANA (ANF)" result was an ELISA test?

Click to expand...

Gosh, Valentijn, that's a stumper. ANF just means antinuclear factor which is another name for ANA which you probably already knew.

Sometimes titers are reported as just a single number which would correspond to 1:194... The reference range is how you can tell these apart. But that would be considered positive and so it is odd that wouldn't be noted as well.

Can you call the lab and ask them? They really should be able to tell you the testing methodology and reference range.

Can you call the lab and ask them? They really should be able to tell you the testing methodology and reference range.

Click to expand...

Yeah, I think that's a good idea Even looking up ELISA data for ANA testing, it sounds like different companies produce different machines that are calibrated differently and operate differently. And really - they should have a normal range listed on the lab results! They did for everything else.

It also sounds like depending on the machine, there might be cross-reactions between different auto-antibodies, and it almost sounds like ELISA ANA screens are generally screening for many things at once and results have to be interpreted to figure out the specific reaction.

I'm not sure exactly what your test results mean as my tests were for blood titers and are in a slightly different form. (Mine was 1:1280, when 1:80 is normal). My understanding is that the best medication for HHV-6 is Valcyte, which I plan to start soon.

Oh wow, I just noticed how many responses there are here, thank you all so much for the information!

I spoke to a nurse and she said the doctor wants me to try Valtrex first because it's mild and in some patients it helps with HHV 6. Would I be better off trying Famvir? Because I'm not terribly ill (I pretty much have moderate POTS + swollen lymph nodes), I think the doctor is afraid to prescribe something with a lot of side effects and risk making me worse.

Can anyone tell me how well these antivirals are usually tolerated? I was put on a lot of antibiotics when I first became ill (because they had no idea what was wrong) and developed intolerance to ones in a few different classes. Has anyone had this happen with antivirals?

Yeah, I think that's a good idea Even looking up ELISA data for ANA testing, it sounds like different companies produce different machines that are calibrated differently and operate differently. And really - they should have a normal range listed on the lab results! They did for everything else.

It also sounds like depending on the machine, there might be cross-reactions between different auto-antibodies, and it almost sounds like ELISA ANA screens are generally screening for many things at once and results have to be interpreted to figure out the specific reaction.

Oh wow, I just noticed how many responses there are here, thank you all so much for the information!

I spoke to a nurse and she said the doctor wants me to try Valtrex first because it's mild and in some patients it helps with HHV 6. Would I be better off trying Famvir? Because I'm not terribly ill (I pretty much have moderate POTS + swollen lymph nodes), I think the doctor is afraid to prescribe something with a lot of side effects and risk making me worse.

Can anyone tell me how well these antivirals are usually tolerated? I was put on a lot of antibiotics when I first became ill (because they had no idea what was wrong) and developed intolerance to ones in a few different classes. Has anyone had this happen with antivirals?

Click to expand...

I've taken Famvir and Acyclovir and not had any issues with them. Maybe a little increased fatigue but nothing like the herxing I got from antibiotics.

I would go with Famvir personally for HHV-6. But some say you need a higher dose to be effective. My insurance company limits me to 2/day and I don't believe that would have been sufficient. People also mix them ie take Famvir and Valtrex together as another way to get the dose up to therapeutic levels.

The good news is that an ELISA test (which is what you had if the result is reported as a single number; titer tests are reported as a ratio) are really only good for answering yes or no questions but not for telling you the extent of the infection or tracking treatment. An extreme elevation (above 8) is generally thought to likely signify a reactivated infection but your result of 66 is not some 8 times worse than a result of 8. Both would be considered evidence of a chronic infection.

What other testing did you have other than the viral testing you mentioned?

OI can often be a result of a disrupted HPA axis so I would strongly consider a cortisol test by saliva and also testing aldosterone. Florinef changed my life in terms of OI but it was a bit of a process to get there and there are some important testing protocols to follow.

Ema

Click to expand...

Thanks for the info about the ELISA test, that makes me feel a bit better. Then would you recommend I ask for a titer now so I have a way of tracking my progress on antivirals?

Also, how much overall improvement in symptoms did you see by treating your OI?

Thanks!

Click to expand...

It is certainly an option to get a titer test. I think it is a matter of preference honestly and finances. I have not had titer testing since the very beginning because my ELISA testing is covered by insurance and keeps coming back indicating a chronic infection. I would personally be more inclined at this point to stay on the AVs for a year or so and then see what the ELISAs look like. But I think it would be equally valid to go the other way if your doctor and finances were agreeable.

Normal is very different from optimal. Hopefully you have copies of all these tests and are saving them in a binder together. There are many clues to be found in "normal" tests that many doctors simply skim over for some reason. For example, on the CMP,a low CO2 value (below 23 or so) may indicate a state of reduced metabolism...a switch to anaerobic glycolysis which results in lowered production of ATP and increased lactic acid which can cause pain. This might be an important clue but is technically a normal result. Same goes for alkaline phospatase. A result much below midrange can indicate a zinc deficiency and zinc is crucial for proper immune functioning. Don't even get me started on thyroid numbers!

Hopefully you got a Western Blot for Lyme and not an ELISA test?

Did you get IgG subclasses along with the total?

I saw a lot of improvement after treating the OI. That and replacing cortisol took care of most of the dizzy, blacking out, shakiness that I would experience and that left me feeling too fragile to go out much. It's so nice to be able to stand up quickly again without being scared of fainting! Sea salt also helps me a lot. Electrolytes are very important in managing OI and keeping a good blood volume.

It is certainly an option to get a titer test. I think it is a matter of preference honestly and finances. I have not had titer testing since the very beginning because my ELISA testing is covered by insurance and keeps coming back indicating a chronic infection. I would personally be more inclined at this point to stay on the AVs for a year or so and then see what the ELISAs look like. But I think it would be equally valid to go the other way if your doctor and finances were agreeable.

Normal is very different from optimal. Hopefully you have copies of all these tests and are saving them in a binder together. There are many clues to be found in "normal" tests that many doctors simply skim over for some reason. For example, on the CMP,a low CO2 value (below 23 or so) may indicate a state of reduced metabolism...a switch to anaerobic glycolysis which results in lowered production of ATP and increased lactic acid which can cause pain. This might be an important clue but is technically a normal result. Same goes for alkaline phospatase. A result much below midrange can indicate a zinc deficiency and zinc is crucial for proper immune functioning. Don't even get me started on thyroid numbers!

Hopefully you got a Western Blot for Lyme and not an ELISA test?

Did you get IgG subclasses along with the total?

I saw a lot of improvement after treating the OI. That and replacing cortisol took care of most of the dizzy, blacking out, shakiness that I would experience and that left me feeling too fragile to go out much. It's so nice to be able to stand up quickly again without being scared of fainting! Sea salt also helps me a lot. Electrolytes are very important in managing OI and keeping a good blood volume.

Ema

Click to expand...

Thanks again for all the info! Yes, I do have a binder full of all my tests in chronological order. I looked at the most recent version of the things you mentioned and they both look good. How else can I find little things like this to look for, just by looking through this forum? Also, I saw Dr. Lapp...would he look for things like that or is that really something we have to do ourselves?

I think I just had IgG for Lyme. Could any doctor do a Western blot test or is that something special? And same for IgG subgroups. I didn't have them done and my overall level was on the lower end of normal so I'd like to. Is that something that's commonly done? I hate to be a patient who demands certain tests but this is such unknown territory that I know I may have to.

Great to hear about OI! I was actually somewhat excited to be diagnosed with POTS...at least the treatment seems a little more straightforward.

In general, antivirals have fewer side effects than antibiotics. I initially had a herx with acyclovir, but it only lasted about a week. After that, I had periods of moderate back and knee pain (presumably as virus living there wa dying off), but was fine with advil. The stronger and broader spectrum the drug the greater reaction you are likely to have, but it varries by person. I have heard many people say that when they started valcyte they felt bad for months. On the other hand, a friend of mine felt like crap for a week and then was fine.

My doctor has recommended Valtrex for my v. high HHV6 titers (also have high EBV) My insurance will only pay for the generic. Can anyone recommend a manufacturing company that they have had success with.
Thanking you in advance for your opinion.

My doctor has recommended Valtrex for my v. high HHV6 titers (also have high EBV) My insurance will only pay for the generic. Can anyone recommend a manufacturing company that they have had success with.
Thanking you in advance for your opinion.

Click to expand...

i would ask im for famvir as its active against more viruses then valtrex?? a few of us have had famvir lower our viruses to cmv and hhv6 but not with valtrex